Back-to-School Handbook

for parents of kids with vitiligo

Dear Parents,

The new school year is approaching fast and while most parents seem to be worried about purchasing the required school supplies, I’m consumed with an entirely different set of worries that come with having a child with vitiligo: Will other kids stare at my daughter – or even other parents? Will she be too nervous and anxious to show her amazing personality? Will kids ask her why she has spots? How will she respond to everyone’s reactions? Will kids not want to play with her because she has these white patches? Will her teacher be there for her?

If you’re the parent of a child with vitiligo you probably share my concerns. Sadly, there are no fixed answers or established solutions for these worries. However, there are other parents, children and so many advocates who have come together to create this Back-to-School Handbook to hopefully lead parents like me to be the best support and guidance for our children as they bravely step into another school year.

This Back-to-School Handbook has been created to provide practical and emotional support for parents and kids with vitiligo heading back into the classroom this fall. We’ve packed the guide full of authentic parent experiences, advice from experts like authors and counselors, and hands-on tools to help you and your little one through the school year. It’s our hope that Living Dappled and this handbook will continue to be a resource and place where parents of children with vitiligo can find comfort and unity, knowing that we’re in this together.

While most parents worry about school supplies and bus schedules, parents of children with vitiligo have a whole different set of concerns when it comes to the school year. Author Lori Mitchell knows those concerns all too well – because she has a daughter with vitiligo too.

We talked to the author of “Different Just Like Me” about her advice for parents of children with vitiligo and here’s what she said.

Meet Kids with Vitiligo From Around the World

Sometimes it helps to know that you aren’t alone. While it’s easy to feel like you and your little one are the only ones going through this, there are kids with vitiligo headed back to school all over the world this fall. Meet just a few of them here.

Parent’s Panel: Back-to-School Q&A

Are you worried? Is your child worried? Will you talk to the teacher? If you’re the parent of a child with vitiligo, you probably have a million things to think about as you approach the school year. And maybe you want to know what other parents facing the same thing are thinking. So we asked nine parents of kids with vitiligo a series of back-to-school questions. Here’s what they told us.

Free Download: Lunch Box Notes

Lunch box notes are a great way to build a little reminder or encouragement into your child’s day. Download these 12 free lunch box templates to get started, or write your own.

How Journaling Helped
My Child with Vitiligo

WRITTEN BY JULIE HARTLEY

Coping with fears, anxiety and self-doubt is difficult for anyone. But when you’re a child with vitiligo, it can be particularly hard to express such intense emotions.

Julie Hartley, mother of an 8-year-old girl with vitiligo, understands this well. After a touching exchange with her daughter, Julie discovered the power of journaling in helping her child share emotions and talk about the things she’s going through.

Reading Corner

Reading with your child can be a great way to create space for conversations about things like differences, anxiety and bullying. This collection of books for kids and teens covers topics including vitiligo, anxiety and overcoming fear.

Real Talk: Moms on Going Back to School

How does your child explain vitiligo to other kids? How do you prepare them to talk about their skin with other kids?

I prep her before school starts and remind her that there will be new kids in her class that don't know she has it. I remind her that there is nothing ``wrong`` with her and if anyone asks, to tell them ``This is how I was born. I'm different and I like it. It makes me special.`` I remind her if anyone is mean to her about it, she needs to tell an adult right away and if it's upsetting her too much, she is always able to ask to see the nurse and call me. She is a very sensitive child and takes everything to heart. As her mother, I need to be sure she is heard, even if it means me dropping everything I'm doing and consoling her at school.

- Bianca

We talk very openly about her vitiligo. I've found that most kids don't even notice it. When they do she tells them she has vitiligo and it's a skin condition but it's not contagious. My niece told her it looks like she's been kissed by angels and that made her smile.

- Allison

She tells them a simple, 6 year old definition. ``I don't have pigment in those spots. It's not contagious and it's called Vitiligo.`` (Or something close to that. Her diagnosis is very recent). We tell the adults ahead of time about her vitiligo if we aren't going to be around whatever social setting she's involved in. We also role play with her so she has practiced what to say if someone asks her.

- Alycia

Do you plan to address your child’s vitiligo with other parents, teachers or administrators and if so, how?

Yes. Will speak to the teacher face to face and I hope to give them a one page document with some additional facts.

- Julie

I will speak with his teacher at the beginning of the year about his vitiligo, so that she knows what his spots are caused by and can answer any questions or comments.

- Amy

Yes. I have told each teacher she has had about her condition and that she is very shy about it. I usually bring it up at the beginning of the school year, or by Open House a few weeks into school.

- Bianca

I do. I think educating people up front is the best approach for us. I plan to start with the teacher and go from there if needed. I am going to share the book ``Vitiligo Doesn't Scare Me`` with her and let her share it with the class as she sees fit. The hardest part for me as a parent is when people are staring and wondering what ``it`` is. If they know, then that removes the mystery. I also worry about my daughter being approached by others. We role play with her so she has practiced what to say in those situations.

- Alycia

Yes, I do every year. I have a meeting with her teacher, I let them know what vitiligo is, that it's not contagious and that there is the potential to be bullied.

- Julie

No. Right now her spots aren't very noticeable. They are mostly on her back. She does have a few on her legs that are noticeable now that she is tan and wearing shorts. She attends a small school and I have a good relationship with her teacher. If I got the sense that she was having any troubles at school because of her vitiligo I would address it with her teacher.

- Allison

If your child has experienced bullying before, what kind and how did you respond to both your child and the teacher or school?

Once, a child said her skin was ``weird`` and asked why it was like that. Thankfully, her best friend was with her at the time and spoke up in her place. She told the child ``She was born like that and that's okay.`` I brought it up to the teacher during back to school night, and she spoke directly to my daughter and made sure she knew she wanted to hear about anything like that happening to her.

- Bianca

She was teased by another girl in the bathroom about her white spots. My daughter told the teacher and the teacher talked to the girl who had been teasing. My daughter shared with me what had happened and I then emailed the teacher. At the time, we weren't sure what the spots were but we knew they weren't contagious so that's what I was sure to emphasize to the teacher.

- Alycia

My son let me know after he was bullied. My first response was anger. But after I calmed down I had to think on how I would like to educate Elijah in what to say to the people who ask, educate his teachers and peers. All I want to do is to protect him. Thinking about home school if it continues to get worse the bullying and the spread of vitiligo.

- Liniah

Real Back-to-School Letters

Let’s get down to it – how do you actually go about talking to your child’s teacher about his or her vitiligo? These moms shared their letters so you can see real-world examples. The first is an email letter from Julie Hartley to her child’s third grade teacher. The second is a letter that Lori Mitchell sent home with her daughter’s classmates when her daughter was younger – April is all grown up now! You can find more about Lori’s letter on differentjustlikeme.com.

Letter from a Mom to a Teacher

Hi Ms. Smith,

It was a pleasure meeting you last week at “meet the teacher” Leah is excited to come back to school!!

I just wanted to give you some information on Leah that I thought would be appropriate to know and understand prior to school starting. She has an autoimmune disease called Vitiligo. It is were her body’s own immune system attacks itself and in her case it attacks the pigmentation in her skin. Depending on what she is wearing she has white patches noticeable on her knees, small ones on elbows and fingers. Also some that are started to regain color on her neck.

She is pretty comfortable with herself and we’ve talked about kids being curious and that being ok. I’ve let her decide what she wants to tell the kids if they ask. Usually she’ll say she got it when she was 3 it doesn’t hurt her. or she has said something related to diet since we have changed her diet. Saying she has Vitiligo probably wont make any sense to an 8 year old.

She has yet to have to deal with kids being mean to her because of this. However she said to me last week…”people may think I am weird because I have Vitiligo” we chatted just about some kids being mean for any reason and to let an adult know if someone has said something that was not ok. I am hoping we never have to deal with it or that it wont happen but in case it does and you hear or see anything if you’d let me know. I’m trying to anticipate the best way to handle it.

Sorry for the intensely long email. Hopefully though you’ll better understand her a bit. I have not mentioned this to Ms. Tyler but if you feel its a good idea that other faculty know please feel free to pass along this email or I can speak directly with whomever.

If you have any questions about anything I didn’t cover in my ridiculously long email (HA) please let me know!!

Thanks!
Julie

*Names have been changed to protect identities.

Letter for Students to Take Home

Hi my name is April,

I am in your child’s class (or I will play with your child on the playground).

​

I like to draw and paint. I have a really soft, playful cat named Gizmo. I love to go swimming and my favorite food is macaroni and cheese, and mint chocolate Chip ice cream.

I also have Vitiligo. Vitiligo is a loss of pigment in my skin. It looks like white patches or “clouds” on my skin.

I’m a little shy at first so it’s hard for me to talk about it at times. Kids ask me a lot of questions about it so I thought I could give you the facts about Vitiligo so that you and your child will know about my condition.

• Vitiligo is not contagious
• It doesn’t hurt .
• I started with brown skin and it is slowly turning white.
• 2% to 5% of the population has Vitiligo.
• There is no safe cure for Vitiligo yet.
• It doesn’t affect me in any other way.

Vitiligo Pen Pal Patch

SPONSORED BY VITFRIENDS

Looking to connect your child with other children with vitiligo? Look no further. Pen Pal Patch is an outreach program hosted by VitFriends where children with vitiligo are paired with a pen pal and can mail letters, send pictures or face chat.

“As a parent of a child with vitiligo, I’ve seen first hand how different kids can feel once they start realizing not all other kids have spots,” said April Sawyer, the Children’s Division Director at VitFriends who created the program.

“My hope is that Pen Pal Patch will build a bridge of friendship among our children with vitiligo. I want Pen Pal Patch to be a positive support system for my daughter and all children dealing with similar issues. This will be their space to express themselves and to build real lifelong friendships.”

Today the program has sixty children enrolled. In addition to being matched with a pen pal, families that join the program will have access to a private Facebook group where kids can get to know one another. In order to ensure safety, the group is secret and admission to the group and conversations within the group are closely monitored. Families can also opt into the Big Vit – Little Vit program that connects kids 3-5 years of age with a child over the age of 10 who can act as a mentor.

One of the largest vitiligo support group networks in the U.S., VITFriends was launched in 2009 to support and enhance the quality of life of those affected by vitiligo through networking and education.

Parent Confessions:
What do you worry about most when you think about your child going back to school?

I worry about other children teasing her. She is a very shy girl and I fear she doesn't have the courage to speak up for herself yet.

- Bianca

I worry that her spots are very noticeable after the summer months and that kids will be shocked to see her skin so different then when school let out for summer.

- Julie

I know that he has many friends, but he does not have 'a best friend.' I hope that he finds that person that he can always count on.

- Tara

I worry that her self confidence will be affected in a negative way.

- Alycia

Children being mean to her about her vitiligo.

- April

I worry more about him making friends in general than any issues with Vitiligo. He is proud of his spots and thinks they make him unique.

- Amy

“Different Just Like Me” Downloads

BY AUTHOR & VITILIGO MOM LORI MITCHELL

Author of the children’s book, “Different Just Like Me,” Lori Mitchell – who is also the parent of a child with vitiligo – has dedicated her career to writing and illustrating books and helping parents of children with vitiligo deal with the condition in schools. Today she speaks at schools and shares lesson plans on how to decrease bullying by increasing conversations about diversity.

Here are some of her resources and downloads for incorporating the book into the classroom: